Norrms Blog

[norrms]

Good afternoon everybody , as promised this is how my meeting this morning went. I would just like to say the the Assistant Director of the South west Care Trust Pat Mc Donagh is one of the most approachable and friendliest men i have ever met in management and his assistant Steve Collins, Dementia lead at Tavistock hospitals is the same. We discussed what has happend so far and what could be done in the future. I am so pleased to say that Elaine and i have not only been asked to sit on the Steering group which will drive through changes regarding Nurses Training, awareness raising and changing the very culture of the way things are done now to an acceptable level for people with dementia and their carers, and i promise, drive them through we will !!! But we have also been asked to meet all Dementia leads in the South west as well as visit hospitals to do presentations to drs, consultants and staff as well. I have long said that alongside of making places community friendly, one of my main aims was to try and change things from within the hospital envioroment and also improve peoples care for those who have dementia and thier loved ones. This includes many ideas such as no strict visiting times for relatives of those with dementia and also allowing them to be there during mealtimes ect. Just a couple of ideas thats been thrown into the hat alongside of Nurses on Day release to care homes and also Carers to come along and teach the nusrsing staff what the reality of looking after someone with Dementia really is!!
Please remember my friends that al,l these things will take time, and even with my passion, things wont change overnight!! but we are on our way to improving things all round regarding Dementia, and Dare i say the, FIGHTBACK HAS BEGUN !!!
As ever i will keep you posted and thank you all so much for your neverending Support, all our love, Norrms and family xxxxxxxxxxxxxx

[norrms]

Good afternoon everybody , as promised this is how my meeting this morning went. I would just like to say the the Assistant Director of the South west Care Trust Pat Mc Donagh is one of the most approachable and friendliest men i have ever met in management and his assistant Steve Collins, Dementia lead at Tavistock hospitals is the same. We discussed what has happend so far and what could be done in the future. I am so pleased to say that Elaine and i have not only been asked to sit on the Steering group which will drive through changes regarding Nurses Training, awareness raising and changing the very culture of the way things are done now to an acceptable level for people with dementia and their carers, and i promise, drive them through we will !!! But we have also been asked to meet all Dementia leads in the South west as well as visit hospitals to do presentations to drs, consultants and staff as well. I have long said that alongside of making places community friendly, one of my main aims was to try and change things from within the hospital envioroment and also improve peoples care for those who have dementia and thier loved ones. This includes many ideas such as no strict visiting times for relatives of those with dementia and also allowing them to be there during mealtimes ect. Just a couple of ideas thats been thrown into the hat alongside of Nurses on Day release to care homes and also Carers to come along and teach the nusrsing staff what the reality of looking after someone with Dementia really is!!
Please remember my friends that al,l these things will take time, and even with my passion, things wont change overnight!! but we are on our way to improving things all round regarding Dementia, and Dare i say the, FIGHTBACK HAS BEGUN !!!
As ever i will keep you posted and thank you all so much for your neverending Support, all our love, Norrms and family xxxxxxxxxxxxxx

[Brindleboy123]

Norms...congratulations! I am sure your family are very proud of your achievements so far, as well all are here who follow your blog. Take good care....and "go get 'um!"

Bell x

[norrms]

Thank you Bell xxxxxxxxx

[Booksey]

Well done Norms Glad they are finally taking notice

[norrms]

Thank you Booksey , Norrms and family

[Myrtle]

Well done Norms, you're a star!

[no1mum]

That's fantastic news, well done Norrms.

[norrms]

Thank you Myrtle and No 1 mum xxxxxxxxxxxxxx

[michael parker]

As usual you are leading the way.Congratulations Norrms,the war may not be over but you are spearheading at the front.

[norrms]

Thank you Michael , noorms and family

[bowlingbun]

This sounds a wonderful idea. My son has SLD. I've often thought that some of the people I've met whilst caring just didn't have a clue about the realities of long term care. It's only through a scheme like yours that they can gain more understanding. Flexible visiting hours means that it's so much easier to park, if you have a car; or that you can plan your visits around bus times. Such a simple thing can make a huge difference.

[bowlingbun]

I'm well aware that it's not just about car parks! Medical staff are increasingly highly trained. From my experiences with mum, they seem to need greater awareness of what caring for someone long term means, regardless of the nature of the illness. I just used this as a very, very simple example of how a seemingly little thing, like changing visiting times so that parking is easier, can make a huge difference to carers, which nursing/medical staff might not fully appreciate.

[norrms]

Feeling So Guilty
During the past week we have been visiting friends whose family members also have this awful disease of Dementia just like I have. We meet every so often and catch up. It’s good to talk about Dementia to people who know what we are going through and also good for the soul when we have all had a really good moan!!LOL
Unfortunately this week some of our friend’s families are entering late stages and others getting worse far quicker than I am. As we talk I can see the pain etched on their faces, faces that not so long ago, looked Defiant and bold, and yet now, there is a look of resignation and utter bewilderment as well as looking very tired from the wondrous job they do looking after their loved ones.
The people who have a diagnosis are very good friends of ours, have been for years now, and as I sit there sometimes and hear them struggle to say simple things, watch them struggle to do everyday tasks, my heart sinks and feelings of guilt wash over me like a never-ending tide. I know it’s silly, but when I see these things happening to very dear friends of mine I feel so guilty sometimes because I feel so well, (Mostly) I know they don’t have Lewy Body`s (my diagnosis) and they don’t have the night terrors or Hallucinations on a nightly basis like I do, but when I present myself so well during most of the day and they can’t, I just wish I could wave that magic wand for them.
It hurts me deeply to see this decline in my friends and I often wonder if they feel the same about me? Am I sliding down the same slide as them but just don’t know it?? They are completely oblivious to it, so, am I also? I often ask my “Angel” if I am getting worse, and as far as I can recall Elaine always says “Just a little” I think the trick is not to ask that question too often, what do you think?? I have often said that the “Mantra” for Dementia is

“Once You Have met one person with Dementia you have met ONE person with dementia”

That is something that will always be true as we are all as different as snowflakes or fingerprints, so I should be at peace with myself as I watch this awful disease take over some of my friends quicker than me, as we are all different, but this is not the case!! I go through a series of emotions which include depression, tears, but most of all ANGER!!
I am SO ANGRY at times that this horrific disease is eating away at the very fabric of our society. This disease is taking loved ones, friends and relatives away before their time, leaving destruction and devastation in its wake. And yet sometimes I think it’s my anger that keeps me going, the frustration that runs through my body makes me so angry at times that I “WILL” myself to keep going and do what I can for as long as I can!! Please believe this doesn’t make me any more of a person than my wonderful friends who are quite ill, I think I am just a lot more Awkward and stubborn than most!!
I just wanted to say that even though I have this awful disease, and even though sometimes I can see my future playing out right in front of me, it still hurts just as much so see my friends hurting and shaking their heads in bewilderment. A cure may not come soon enough for some of us, but if we can improve people’s lives in the future, if we can rid this horrid disease of the Stigma that goes with it and if we can give back the dignity to all those who feel they have lost it because of Dementia, then believe me, I will feel as if it is all very worthwhile.
Norrms and family xxxxxxxxxxxxxxxxxxxxxx

[norrms]

Hiya, as you know Elaine and myself are working alongside the Dept of health and have been campaigning for four years now to have an information leaflet speacially designed to give to those who are newly diagnosed with Dementia and their loved ones and carers. Please click on the link to see the proto type we have come up with. It has all the relevant info on it and more imprtantly (In my eyes) a reminder to make a follow up appointment, as shortly after the news has sank in, so many questions appear in your head (I KNOW) this will hopefully allay the feeling of being left out on your own. As always we need the go ahead for funding so please wish us luck and cross everything !!LOL All our love, Norrms and family xxxxxxxxx
http://www.scribd.com/doc/98627559/GP-Dementia-Leaflet